Poignancy

Baby Casey, 14 years later

Sometimes when women arrive at my Facebook group for those currently going through a miscarriage, they ask, “How long until I get over this?”

All I can say is, “Fourteen years and counting.”

One of the hard things about losing a baby that no one else felt, or saw, or touched is that everyone wants you to get over it quickly. They don’t have the same emotional investment. Pregnancy, with its sleepiness and dream-like quality, encourages the visions of the baby to come, the moments ahead. It’s how you get through the hard stuff—throwing up, bone-tiredness, caution and fear. So we’re wired to already see and experience this baby well beyond the sensations in our belly.

In her book Virgin Blue (which has lots of miscarriage and pregnancy trauma within it), author Tracy Chavalier’s characters, both midwives, talk about how the pregnant mother is always “listening” inside her. She’s distracted, taken out of the outside world, and focused on what is happening within.

It really doesn’t matter when the conversation stops, the day after the positive pregnancy test or during the birth, when some tragedy takes the baby during its final journey to the outside. It’s still a cutting off, a silencing of a relationship that had become the focus of your life.

Fourteen years ago today, I didn’t realize my connection had been cut. I suspected—but then every pregnant mother seems to always have some fear—but until the Doppler was silent, until the doctor was rushed in and the sonogram machine powered up, until he moved and moved and moved the paddle, trying to find an elusive heartbeat for a 20-week baby who should have filled the screen with movement and sound, but didn’t. Until I had proof; I hadn’t known.

April 28 taught me how to listen, how to hear, how to know when the conversation ceased. My next two losses were no surprise. I had learned the difference between the hum that reverberates between a mother and an unborn child and the silence that means the child is gone.

And this year, at 42, I am getting married again and, next month, taking that journey one more time. I don’t even know if the conversation will start. I may not be able to get pregnant at all. The chromosomes in my eggs may be too sticky to divide properly and get the baby on its journey. But I will listen, and I will hear. And whatever conversation I might get, however many days or weeks or months I may get to feel that hum, I will take them.

One thing I’ve learned in 14 years—I am not afraid. I hope, for all of you, who may be reading this after searching the internet about pregnancy loss, that you find that courage too.

 

The Etta James Experience

I think maybe all of us have an Etta James song that speaks to us, maybe ten.

The singer, who died a few days ago, had a way of making those words spear straight into you. You didn’t just listen, you ached.

One of my favorite songs is one of her most famous, “At Last.” This song ate me up during a time in my life when I felt it utterly described the love I was feeling.

 

I’m glad my “I’d Rather Go Blind” days are behind me, as that is sometimes the way that “At Last” feeling ends up. That one did for me.

I can finally listen to it now without feeling the misery of it. But there was a time when this song would force me to pull over my car, as I couldn’t see to drive anymore.

I’m lucky now. Today’s “At Last” moment will actually last. I’m getting married (again) in June. Let’s hope we can keep it going like this. Thank you, Etta.

The mixed blessing of the holidays

I don’t think anyone who has lost someone close to them ever feels purely happy during the holidays.

I remember as a child, having a very clean joy. I was full of anticipation of presents and cookies and days off from school. In Texas, we never knew if it would be cold, or if we’d be wearing short sleeves, and I only recall one white Christmas in all those years living at home. In fact, I was lucky. Because my parents were young, my grandparents young, I didn’t lose anyone close to me until I was an adult, the biggest loss of all.

But the Christmas prior to the bad year was not too happy either. We’d been trying to get pregnant since March. Babies were popping up all around us. My parents finally knew not to ask anymore, realizing something was awry.

There is a picture of my husband and me that year, by the tree. I’m wearing a shiny gray outfit, my hair up in a bun, and I look perfectly miserable, annoyed that someone is taking my picture. I’m devastated to be around family, but grateful that babies are not appearing yet. Tucked just a room away, within the drawers of my nightstand, were sheafs of basal body temperatures. I was trained to recognize ovulation and pregnancy, but only years later, when I became much better at reading the charts, would I see what was happening. Early miscarriage after early miscarriage. Cycles that I thought were wildly erratic, going from 25 days to 45 days, were not normal cycles at all, but low progesterone cycles, failed implantations, and early losses that were not even picked up on the tests of those days, where 100 was the minimum hormone threshold for a positive (today it is 20.)

What I didn’t know as I took that frowning picture was that I was indeed pregnant. And that by some miracle, it would stick for twenty long weeks. But only twenty weeks. And by the next Christmas a new ornament would appear on my tree. Casey’s.

This year, Elizabeth found Casey’s ornament first. She tugged it out, puzzled over the name for a second, then realized whose it was with an elongated, “Ohhhhhh.”

She brought the little plastic soldier bear to me. “I think you should put this one on,” she said.

I could not have pictured this moment that Christmas, that one day one of my children would hand me the ornament bearing the other’s name. I just knew then that I couldn’t carry babies, and that yet another one in my belly that year, the second or sixth, however you might count them, was in danger. My high-risk doctor was hopeful that I would make it to 25 weeks and give the new baby a chance of surviving. But that Christmas was strained and frightening, and the holiday never returned to that purity of joy I had before my twenties.

Now, with two lovely daughters and so much to celebrate, I make sure their Christmases are as lively and pure as my own (although this year it looks like we might be wearing SHORTS!) Elizabeth hands me an ornament, but the pain doesn’t stick to her. And once I put it on the tree, and admire it for a moment, I also return to our task, decorating and cooking and wrapping, for a holiday that can be as merry and bright as I am able.

A family displaced by wildfire

I am a photographer involved in the Recapturing Memories Project, an organization that pairs families who have lost their homes to wildfire with a photographer who provides a free family portrait session to mark their new beginning.

The first family I was given lived in the Tahitian Village area of Bastrop, one of the hardest hit. They invited me to come with them as they took their two daughters, aged five and seven, to the site of their home for the first time.

The Callaghans moved to Bastrop in 2007 from California, and purchased a home in the piney woods and two lots adjacent. Here is their home just a few months before the fires, after a rare Texas snow.

 

They had no idea they would flee this home just four years after their arrival, a harrowing drive through smoke and fire after rescuing their large collection of family pets. This was the scene just before they made their getaway through the neighborhood.

When they finally made it through and out into safety, they realized they wanted to move back to California to be near their family.

While all 15 of their animals were saved, only a few of them will be able to make the road trip to their new life. Others have been adopted by friends whose homes were unaffected.

They would like to take this stone with them, as it is the only surviving element of their actual house, but they fear it would weigh down the car too much, and requires equipment to lift and move.

I’ll be taking their happier family photo in and around the places in Bastrop they want to remember, as well as contacting all the photographers who photographed them during their time here, in hopes of recovering a few of the images they had taken while they were Texans.

Mostly I wish them happiness and peace in their decision to leave this behind them.

Baby Casey would have been 13 today!

My first baby Casey would have been thirteen years old today, and we’re celebrating his would-have-been birthday with give aways of some great books on loss.

Since we can’t give Casey the things he would have liked, instead we’re giving things to YOU!

Head on over to the site of Baby Dust, my novel on pregnancy loss that will be released Oct. 1, and comment on any of the titles that you might find helpful. We’ll give away the books on October 1 to kick off Pregnancy Loss Remembrance Month.

We’re also taking this special day to celebrate the completion of the Baby Dust Book Trailer. Women from Ireland, London, Australia, Mexico, and the US talk about their babies, and the women of Illuminate, a photography class for grieving mothers, took the images that are used.

A Mother’s Day Request from Me to You–Yes, YOU!

Mother’s Day is a really tough day for a lot of people. Some were expecting a baby, but tragedy struck, and this Mother’s Day will be spent in grief rather than celebration.

Other Moms will be celebrating with their children, but lost their own moms or grandmothers this last year, making this the first Mother’s Day without them. I lost two grandmothers last fall myself.

I’m asking everyone I know to reach out to these people on Mother’s Day in a very simple way.

I have designed several digital cards that recognize that Mother’s Day often comes with mixed feelings. These cards emphasize peace and love for those who may not feel joyous on the holiday this year.

So choose the one that you think fits that person in your life who may be having a bittersweet Mother’s Day. Then right click to Save As and email it this weekend.

Feel free to upload them to Facebook if that’s where your friends are.

They are also already uploaded on Facebook if you just want to use the “share” feature. Find them on one of these pages

My Personal Facebook Page (You don’t have to be my “friend” to see them, but feel free to friend me!)

A Place for Our Angels Facebook Page

Casey Shay Press Facebook Page

And bloggers, feel free to post them in your own blog posts to help them spread. They are free to use for personal use.

Even if you aren’t close to some of your Facebook friends, take note if you saw things happening to them this year. Do something. Remember. Reach out. It’s amazing what a difference such a simple thing can make.

A Conversation about Heaven

About an hour ago, Elizabeth and I said our nightly prayer, which includes asking for God’s blessing on our friends and family members by name.

This time she said, “Don’t forget Irma.” Our good friends lost their two-day-old newborn yesterday.

“And God bless Irma,” I said.

“And her baby,” she added.

“And her baby.”

She pulled her pink kitty pillow closer. “Is Irma’s baby in heaven yet?”

I nodded. “He died last night, about the time you went to bed.”

“I know that,” she said. “But is he in heaven yet?”

“He is,” I answered. “How long do you think it takes?”

“About a week.”

I tucked her two favorite blankets around her. “So, where do you go for that week?”

She thought for a moment. “The waiting room. Like at the doctor.”

“I see.”

“Do I have to go back to the doctor?”

“Yes.” While I was at the hospital yesterday, Elizabeth had another seizure at school, this one much worse, adding four minutes of unresponsiveness to the old pattern of dizziness and inability to walk. She’d always been lucid through them before.

“Oh brother.” She sighed and closed her eyes.

She’s tired now, earlier than usual. We had to increase her medicines yet again and now must monitor her sleeping patterns in case the bigger doses make her too sluggish. But still, we have to increase the meds once more next week. Her body may no longer be responding to it.

I have known helplessness as long as I’ve known motherhood, my own first baby dying when I was 20 weeks pregnant. Then losing Elizabeth’s twin, a trauma that may have caused her brain damage.

How can we feel so desperate to protect our babies and yet be able to do so little?

She opened her eyes one more time. “It really doesn’t take a week?”

“Nope. Happens right away.”

“So Irma’s baby is already there?”

“Yep.”

“Can he see us?”

“Maybe.”

“Can I tell him to take care of Finn?” Elizabeth’s fish has been sick for several weeks. “Fish do go to heaven, right?”

“I think so.”

“Do they have to wait a week?”

“Nope. Not fish either.”

She yawned and settled back into her pillow. “Good. I wouldn’t want to wait that long.”

Neither would I. And yet, we wait our lifetimes. Hopefully long ones. And hopefully ones where joy comes more often than loss, and fear is pushed away by faith.

Elizabeth’s Not-So Merry Go Round

And the health care system goes round and round. My 8-year-old daughter Elizabeth and I feel like we’re getting tossed like so much Caesar.

When I was in second grade, our school yard had one of those old-fashioned merry-go-rounds, a metal circle with handle bars. You ran alongside it, and when you hit the perfect speed, you’d jump up and hang on.

Most playgrounds don’t have these anymore. That year, I was idly sitting on it during recess, reading a book. The football team came out to practice on the field adjacent to the playground. They decided I looked like I needed a little fun, so they began spinning the merry-go-round. Naturally, with six athletic teenage boys putting their muscle into it, I spun very fast. My book went flying off the bumpy metal wheel as I hung on to the handle, bracing my feet against the opposite bars in hopes of being able to ride it out.

But I couldn’t. Even though the boys stopped running and backed away, I couldn’t hold tight enough and flew off, landing in the gravel.

It could have been worse. Nothing was broken. I skinned one side of my leg and arm, a mass of blood, dirt, and gravel. The boys were terribly sorry and tried to hand me my book. I got tons of attention I neither needed or wanted. Shortly after, this merry-go-round was removed. I was blamed, and this ushered in a rather unhappy period of that year.

The way our world has spun since Elizabeth had to go on full-time anti-seizure mediation has been just as sickening, and I definitely feel the fear of a terrible crunch at the end. In this week’s whirl, we got our three-month supply of medicine only to open the box and discover the generic instead of the brand name.

Our neurologist had absolutely insisted we not do this particular medicine in generic, as we had done for the first month. The FDA only requires a generic dosage be within 80-125% of the correct amount of the brand. For a tiny girl like Elizabeth, getting 80% of the lowest dosage that she’s already on, since she is so small, means she may get seizures. Which means we’ll think it’s not working even if it might be. And of course, that she might have something happen to her, the always-fear when seizures are present for anyone.

To add to the fun, the suspension that the generic drug sits in as a liquid (she’s too small for any pill dosage) is seriously inferior to the brand name, making it appear like sour milk. We are quite certain that the cloudy liquid and the thick white chunks are not the same dosage, so we had to be super-vigilant about shaking it very very well. And even then, it seems like the bottom of the bottle is not the same color as the top.

We confirmed all this with our pediatrician yesterday. I ran to our local Randall’s, which had filled our interim prescription correctly with the brand name, and they delivered the bad news: since we had three months of generic from the mail order, the insurance wouldn’t cover it. We’d have to pay $186 a month for three months to get the brand name.

Upon calling the neurologist, we learned she had forgotten to uncheck the generic equivalency box. Her mistake, they were sorry. $600 sorry?

In more urgent news, all this delay meant we were OUT of medicine. Tick tock. This is an uncommon drug as a liquid and not stocked in most pharmacies.

Let me tell you, if you are ever in any sort of medical bind, I hope you get a pharmacist assistant like Cecilla at our local Randall’s, who, despite the fact the error was the doctor’s, and despite the fact that a mail order place got us the wrong medicine and it wasn’t anything to do with her, spent hours on the phone, negotiating with the insurance, putting in a medical emergency override, and getting us the rare brand name drug for $25, all within 16 hours.

I know most of us are at the mercy of doctors, insurance companies, and drug policies. But sometimes, people in the system do stand up for you. And sometimes, it’s not even the people you think it will be.

Elizabeth has gone 8 weeks without a seizure. We hope that means the drug, our second one to try, is working. She’s been to Magic Camp, finished her Pokemon game, and kept her nose in Gail Carson Levine books all summer. She just finished second grade. Our merry-go-round has been about as traumatic as that ride I took at her age, and the consequences have been, like mine, minor compared to what they could be. We see parents of children with heartbreaking problems and count our blessings. Certainly right up there on that list is Cecilla, who helped make sure that as the world started spinning out of our control, that we got the care we needed.

On Cheez Whiz and Seizures

I’ve always been told that the more adjectives you pile on, the further something deviates from what you thought it was.

Take Cheez Whiz. It is not cheese. If it were cheese, the package would just say “cheese.” At most, “cheddar cheese.” Or “American cheese.”

But no. Cheez Whiz, in addition to its aberrant spelling, also packs on the modifiers. “Processed cheese food product.”  There’s no hiding the fact that it’s made of chemicals in no way resembling the version solidified from the bodily fluids of a cow.

I’ve found, in this year, two months, and twelve days since Elizabeth’s first seizure, that I’ve been guilty of modifiers. “Seizure disorder.” “Seizure-like event.”

Tiptoeing, as it were, around the thing I’d rather it not be. Seizures. Epilepsy. A life-long battle. No cure, in our case. Hard to treat.

The meds aren’t working. Elizabeth had another big one today. She was hysterical, the Keppra doing it’s job of scrambling her emotions, making her react strongly and violently to everyday events, so a big one like this sent her over the edge. Sobbing, gulping, having trouble breathing because she’s BEEN TAKING THE MEDICINE EVEN THOUGH IT’S YUCKY AND WHY IS THIS HAPPENING ANYWAY?”

We had tried easing the misery of the foul-tasting liquid. First with the extend-tabs, which were too big, and she choked. Then we tried to get the crushable pills, but the penalty for the doctor writing the Rx “dispense as written” made them $461. How are people supposed to do that? So we’ve continued the liquid, Elizabeth cheerful about it, finding ways to squirt it in the pocket of her cheek to minimize the taste.

But tonight she couldn’t walk, couldn’t get off the bed, too dizzy to move, completely distraught until she started throwing up despite the anti-nausea meds. All the side effects and none of the benefits.

“Why didn’t it work?” she asked between big heaving gulps of air.

I couldn’t tell her. I had no answers.

I can pile on the modifiers, try to change the way it sounds, put a spin on it. But that won’t change anything. A seven-year-old is afraid. And we are too.

Grace in the face of adversity

My youngest daughter is Elizabeth Grace. She’s seven, likes to paint her fingernails a new color (or two) every day, refuses to eat anything that isn’t yellow, and has a still-unclassified seizure disorder due to malformations of her brain.

For the past two days, we’ve been snagged in a sea of health care red tape. Only one pediatric neurology group exists in town, so we have to play by their rules. They won’t see her until March, and that’s only if they’re willing to make an appointment, as right now our pediatrician hasn’t jumped through the proper hoops.

Last February, when Elizabeth had a grand mal, followed by a day of dizziness, inability to sit up, stand, or walk, we ended up going back to the hospital when we could have simply done outpatient testing at one-tenth of the cost. But Circus Oz came to see the patients, so if you ask Eliza, she would tell you, “IT WAS TOTALLY WORTH IT!” Missing school for a week? Not so much.

She’s back at school today despite three episodes that can’t be classified for certain without tests. Her pediatrician thinks they could be halo-vomit-migraine patterns, but they could also be seizures with traditional post-seizure side effects. Meanwhile, Elizabeth goes merrily on her way, choosing between braids or headbands, hoping her heart shirt matches her sparkly jeans, and wishing her math homework wasn’t quite so hard. She has trouble concentrating at times and deals with pains, both real and phantom, most every evening and night. She sleeps in troubled bouts, and if she gets too stressed or deals with too much static in her brain, will simply fall asleep wherever she is (sometimes even on the bottom step of the staircase if climbing them seems too much trouble.)

Specialists are hard to come by, and it seems more would-be doctors are shying away from fields that require too much bureaucracy, or ones where it can be hard to keep the clinic in the black, with all the staff required to keep the forms moving. And at times like this, when we’re unable to treat a second-grader who might embarrass herself in front of her class at any moment by falling down and throwing up, it’s frustrating to feel that the system doesn’t work even for upper middle class families with good health insurance. I can’t imagine how much harder it would be if we were poor, although I guess we’d just park ourselves at the hospital and let the bills fall where they may.

She’ll hop off the bus shortly, thrilled to have seen her friends, bummed that she has to do homework again after two weeks off, and hopefully without any trouble this day. She doesn’t always realize when she’s having illness-related problems, when one day she can add triple digits and laugh about how easy it is, and the next will lie on the floor and cry over seven-plus-eight. That’s the job of those of us around her, to keep her calm and safe and hopefully get answers when answers can be determined, and solutions when solutions can be found.

I’m not sure what we’re owed from our health care system or what we should even expect. Maybe I want too much. But to see a doctor, one who has trained and has as much information as anyone might, seems the most basic of services. So today, that is what I fight for: an appointment. And let the answers fall where they may.

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